Blogs

Robert Burns Was No Peasant Poet, He Was A Master Of Self-Promotion

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  By Murray Pittock in The Conversation.   In the Edinburgh World Heritage website’s story about Scotland’s bard, it notes that when Robert Burns “the ploughman poet” came to the city in 1787, he was “a new boy in town and a great looking heart throb”. It’s a familiar description, dating back to the writer Henry Mackenzie’s review of […]

Guidelines For ME/CFS Outdated And Dangerous

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By Felicity Nelson in Medical Republic.   NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]

Trial By Error: My Six-Month Review

David Tuller

    By David Tuller, DrPH So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, […]

Changing The Narrative #2: Warring Factions, Divide & Rule And Death Threats

Valerie Eliot-Smith

    By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  Introduction This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). The first part of this series can be found at Changing the […]

Company Praised For ‘First Accessible Parking Bay For Charging Electric Vehicles’

Disability Parking

  By John Pring in Disability News Service.   Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles. Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to […]

Living My Life In The Grey Area Of Disability

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    By Victoria Venable in The Mighty.   When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism. Ableism: Discrimination or prejudice against individuals with disabilities. In the last nine months of my […]

Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

Valerie Eliot-Smith

    By Valerie Eliot Smith in valarieeliotsmith.com.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

18 Things I Learned In 2018

Pippa

    From the Life Of Pippa blog.   Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky […]

4 Essential Limitations To Set When You’re Chronically Ill

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By Tony Bernhard J.D. in Psychology Today? For many years after I became chronically ill, I was in denial about the need to set limitations in order to keep my symptoms as manageable as possible. I refused to believe that I might not recover my health. I thought: “You get sick; you get better. It’s as […]

11 Hidden Realities (And 4 Hidden Gifts) Of Myalgic Encephalomyelitis

Mighty

    By Lisa Alloto in The Mighty. You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks! 1. You will likely grieve, and grieve […]

Dear Bug… I Don’t Survive at Being An Adrenaline Junkie

Jessica

  By Jessica Taylor-Bearman.   Dear Bug… I Don’t Survive at Being an Adrenaline Junkie It’s interesting when you learn things about yourself that have probably always been there but I’d not even noticed. This week I’ve been in London, well for four days – a mini week! I really wanted to attend The Author School and […]

My Wife Isn’t Tired

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  By Paul James.   I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her.   I need however, to start with […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS)

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By Cort Johnson in Health Rising.   Your family, friends and even your doctor may, probably will at some point, prod you to get moving.  They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you […]

Surviving, (Hiding), And Thriving With Cognitive Impairments

Lisa

  From the Chronic Illness: Realistic Optimism Blg y Lisa Alloto.   As the years have gone by with Myalgic Encephalomyelitis (ME), the cognitive impairments have grown.  My brain is slower to process information and conversations.  For example, it takes longer to find the right word, to remember someone’s name, and quite often to even to […]

Filling “The Landscape Of Unmet Needs” In ME/CFS and FM: The Bateman Horne Center Pt 1

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    By Cort Johnson in Health Rising.   This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah.  She could […]

Humans of ME/CFS – Keith B

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From Solve ME/CFS Initiative. My ME/CFS story is 30 years long. It began in 1985 when I was stricken with a virus that never left and evolved in its effects. In the early days, I had to go back to bed after cleaning my teeth. Now, fatigue is not so much a problem but still […]

Trial By Error: Australian Draft Report Seeks Comments

David Tuller

    By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]

Life With A Chronic Illness: The Unspoken Truths

Lisa

  By Lisa  Alloto in her Chronic Illness: Realistic Optimism Blog.   Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment.  On top of that, and most of all, you must deal with the chronic illness itself […]

Trial By Error: The New Interferon “CFS” Study

David Tuller

    By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Chronic

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. […]

Trial By Error: How BMJ Enabled Bristol’s Ethics Exemptions

David Tuller

      4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]

Inside The Mind Of A Chronically Ill Person Debating If They Should Post On Facebook

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  By Jennifer Steidl in The Mighty. Nobody is “normal.” Everyone is unique. That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body). And the places in your mind that change can be impossible to perceive; what is caused by […]

Things Like This Stop Me From Living My Life The Way I Want To

Taxi

By julieannereynolds in Scope. Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia. In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law. In 2015 I led a campaign to […]

Trial By Error: The View From Norway

David Tuller

    By David Tuller, DrPH. I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking […]

Ruins: An ME Senior’s Perspective

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  By Eileen Rosenbloom in #MEAction. You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

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  By Jennie Spotila, in the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

If Someone With Chronic Illness Says They’re Tired, Please Think Before Responding, ‘Me Too’

Chronic

    By Kaisha Holloway in The Mighty.   When being “tired” is more than just feeling tired… Don’t you just hate it when people try to get one up on you, by always striving to be worse off than yourself? Don’t you just hate it when people assume that tiredness is the same for […]

15 Signs That People Needed To Take Time Off For Their Health

Chronic

  By  Julia Metraux in The Mighty.   If you have a chronic illness, you know that managing your symptoms can feel like a full-time job. There’s a chance that you also have different responsibilities in your life besides managing your symptoms, like work, school, or taking care of your family. But what happens when you need […]

The Isolation I Feel as I Parent Kids With Disabilities

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    By Laura McLean in The Mighty. Raising children with disabilities can be challenging and rewarding, often within the same day — or even hour. Our emotions as parents are complicated. We can simultaneously feel like giving up and also be ready to go to the ends of the earth for our children. We […]

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